By: Demetria Ennis-Cole, Ph.D. Profiles of Autism North Texas

General Findings General Findings Study: Faces of Autism North Texas ( ) 80% Return Rate More than 280 Families Responded Individuals residing in other states (Vermont, Connecticut, Kansas, Tennessee, Arkansas, Massachusetts, Michigan) and other parts of Texas (south and west) took the survey; their information was not included.

General Findings General Findings The diagnosis was typically made by: Team of Professionals in 28.1% of the families, Team of Professionals in 28.1% of the families, Clinical Psychologists in 25.5% of the families, Clinical Psychologists in 25.5% of the families, School Counselor or School Psychologists in 17.9% of the families, School Counselor or School Psychologists in 17.9% of the families, Psychiatrist in 16.3% of the families, and Psychiatrist in 16.3% of the families, and Local Clinic or Family Physician in the remaining 12.2% of families. Local Clinic or Family Physician in the remaining 12.2% of families.

General Findings General Findings According to the families surveyed in the North Texas area, their children with Autism were most commonly given the following diagnosis: According to the families surveyed in the North Texas area, their children with Autism were most commonly given the following diagnosis: 1.) Autistic, 2.) PDD-NOS, and 3.) Asperger’s Syndrome

General Findings General Findings Parents of children in North Texas affected by Autism are typically between the ages of 35 and 44 (53.3%), and they use the Internet regularly from their home to research information on Autism Spectrum Disorders (more than 95%). These parents rely on their local Autism Society for information, and many attend local conferences on ASD. Several (19.9%) attend state and national conferences to gain additional insight and information on ASD.

General Findings – Age of Parents General Findings – Age of Parents

General Findings – Parents’ Internet Access General Findings – Parents’ Internet Access

Educational Level of Parents Educational Level of Parents Most parents have attended college or are college graduates. Most parents have attended college or are college graduates.

Educational Placement of Children Educational Placement of Children Children attended public school, followed by private school, home schooling, and other placement options. Children attended public school, followed by private school, home schooling, and other placement options.

Parental Perceptions of Teachers Parental Perceptions of Teachers Overall, parents of children in North Texas affected by Autism have positive things to say about their child’s teacher. Overall, parents of children in North Texas affected by Autism have positive things to say about their child’s teacher.

Health of Parents Health of Parents Parents of children in North Texas affected by Autism rate their health as excellent or good. Parents of children in North Texas affected by Autism rate their health as excellent or good.

Increased Stress of Parents Increased Stress of Parents Parents rate their health as excellent or good, but caring for their child with Autism increases their level of stress. Parents rate their health as excellent or good, but caring for their child with Autism increases their level of stress.

Income Income Families in North Texas affected by Autism listed the following as their household income. Families in North Texas affected by Autism listed the following as their household income.

Out of Pocket Expenses Out of Pocket Expenses 1.) $1,000 to $9,999 per year, 2.) $0 to $ 999 per year, and 3.) $10,000 to $19,999 per year. 1.) $1,000 to $9,999 per year, 2.) $0 to $ 999 per year, and 3.) $10,000 to $19,999 per year.

Interventions Used Interventions Used Biomedical, behavior, and other therapy interventions are used simultaneously. Biomedical, behavior, and other therapy interventions are used simultaneously.

Interventions Used Interventions Used Other, please specify Other, please specify

Interventions Used Interventions Used Other, please specify Other, please specify Special Olympics Play TherapyVideos, Games Internet UseEdMark Reading Program Comfy Land Computer Programs Listening Programs Social Skills Classes Gymnastics Auditory Integration Karate, T-Ball, Modified Sports Diets

Interventions Used Interventions Used Other, please specify Other, please specify MedicationBrushingCircle of Friends Life SkillsMusic TherapyPPCD InclusionSCERTSCraniosacral Therapy Sign Language NeruofeedbackBrain Training Therapy

Problems of Children Problems of Children Difficulty Eating Foods with Certain Textures, Anxiety, Behavioral Problems, Non-Compliance, Over Stimulation, and Seasonal Allergies. Difficulty Eating Foods with Certain Textures, Anxiety, Behavioral Problems, Non-Compliance, Over Stimulation, and Seasonal Allergies.

Parents’ Speak Parents’ Speak What do you wish others knew about your life with a child in the Autism Spectrum? What do you wish others knew about your life with a child in the Autism Spectrum? “I wish others could really know the mix of burden and joy that is our life. He is truly a wonderful blessing every single day. But he is also completely dependent on our ability and willingness to help him.” “I wish they understood how to offer support, and could/would help with respite care from time to time. I wish extended family would get more involved in trying to learn more about the nature of autism and how it affects our family.”

Parents’ Speak Parents’ Speak What do you wish others knew about your life with a child in the Autism Spectrum? What do you wish others knew about your life with a child in the Autism Spectrum? “If most could just understand the complexity of the mind - they are not just stupid or retarded. They are beautiful people.” “For the public to stop judging us and labeling our kids as bad kids or poor parenting. It is a major challenge raising kids on the spectrum and we do the best we can and especially when there aren’t any other forms of support for us. Instead of judging us, try asking if we need help.”

Parents’ Speak Parents’ Speak What do you wish others knew about your life with a child in the Autism Spectrum? What do you wish others knew about your life with a child in the Autism Spectrum? “Stress is never ending. Just when you move through one problem or crisis, another one pops up. We need people to help with everyday care issues. One size fits all programs do not work. We need help early on when they are young so that they maybe won't need it later.” “It is a 24/7 job regardless of where I may be. The financial and marital stress from having a child with ASD is more than any other type of stress I've experienced. There is no such thing as a "good night's sleep;" we may never be "empty nesters" and the worry about what will happen to her when we are no longer able to care for her is constant.” “It is a 24/7 job regardless of where I may be. The financial and marital stress from having a child with ASD is more than any other type of stress I've experienced. There is no such thing as a "good night's sleep;" we may never be "empty nesters" and the worry about what will happen to her when we are no longer able to care for her is constant. ”

Parents’ Speak Parents’ Speak What do you wish others knew about your life with a child in the Autism Spectrum? What do you wish others knew about your life with a child in the Autism Spectrum? “That it is very lonely and isolating; my son needs to play and be engaged with typically developing children so he can model their social/emotional behavior instead of always being stuck with kids who have disabilities too.” “ People with ASDs have much to offer the world and need respect for their ABILITIES. ” “ That my son is not strange, and if other people would get to know him without judging him first [they would see that] he is a wonderful individual.”

Parents’ Speak Parents’ Speak What do you wish others knew about your life with a child in the Autism Spectrum? What do you wish others knew about your life with a child in the Autism Spectrum? “He looks normal, and I love that you think he isn't really autistic. It's a huge compliment to me that he is doing so well. But he needs reminders and a little management to keep it together in social situations and busy settings. Please do not assume I am a witch or a bad mother or mean person when I speak to him firmly in a louder than normal voice. He has auditory processing problems, and he will not hear me unless I do this using very simple, direct words. Please do not tell me to relax and ignore him. If I had relaxed and ignored him, he would still be beating his head on the ground and screaming 12 hours a day. He would not be talking. Please try to understand even though you aren't seeing it. You don't want to see the autism. It's not pretty. ”

Summary This comment from a parent is an excellent summary: “Children with autism can learn to relate to others. More resources offered through schools would improve the lives of children with autism and probably also other students. There are multiple stresses for families when their child has Autism, but also lots of joy in seeing them improve and learn. Autistic kids are extremely hard workers who want to do their best.” With our combined help, we can include children with ASD and help them take their place in society. It takes lots of patience, resources, and education on the part of us all.